Ehlers-Danlos?

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do-over
Regular Member


Date Joined Oct 2003
Total Posts : 162
   Posted 2/1/2010 4:18 AM (GMT -7)   
Has anyone here heard of this syndrome? 
 
 

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/1/2010 11:13 PM (GMT -7)   
A married couple I know both have it. Hers is mild but his is a lot more severe. He wears supports on his knees and elbows to stabilize his joints.

She has fibro symptoms but he doesn't.

do-over
Regular Member


Date Joined Oct 2003
Total Posts : 162
   Posted 2/2/2010 4:04 AM (GMT -7)   
I wonder what type of doctor they see for this? I have just about every single symptom listed .... and so do several people in my family. It looks like I would need to see a geneticist, but there aren't any near me and I don't have a ton of money.

Not like there is a cure for it, but my dad has had problems with aneurysms .... and I guess it would be good to monitor that in the future instead of waiting for one to rupture! Also, it would explain so many things to me ... sometimes I feel like all of this must be in my head ... but you can't 'imagine' hyperflexible joints that dislocate, sores that always take weeks to heal, feet so flat (at the age of 35) that I have been told I won't be able to walk by the time I'm 60 (3 different dr's and a physical therapist all said the same thing). I'm 6' tall, have been picked on since I was a little girl about how long my fingers are, I had to have a palatal divider when I was a kid because my 'mouth was too small and my teeth were all jumbled and growing in the wrong places". (my dad still laughs about hearing the orthodontist say MY mouth was too small!) I had to have 8 teeth pulled in one day, just to make room in my mouth for the rest of my teeth! I have osteoarthritis in my hands, knees, neck and feet. I am extremely weak .. can't last more than 3 minutes on an eliptical trainer ... I FALL OFF. ALWAYS had poor muscle tone. In fact, I can't find an exercise that gets my heart rate up before my legs and arms give out. Somedays, I can't even dry my hair because my arms are too tired from holding them over my head! I have pins/needles all over .. especially hands, arms, feet. I ALWAYS have blood in my urine ... always. No one can figure out why. And I've had to have several iron infusions because of anemia. I have chronic pelvic pain. I have fibromyalgia, I have IBS symptoms, I have anxiety, and I am always tired.

Good grief ... I sound like a mess .... but it's all REAL. And if you look up the symptoms list of Ehlers-Danols ... IT'S ME!!!!!

Now what do I do? I guess I'll start with a call to my GP ... he's a nice guy ... maybe he'll know what to do.

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/2/2010 7:09 AM (GMT -7)   
Wow, you do have many of the symptoms! Maybe there is a support group near you. Support groups usually can help you find a good doc or stear you away from the bad ones.

You definitely need to find out, some of the vein/artery stuff can be serious. Hopefully, you can find a great specialist. If there aren't any in your region, maybe your doc can consult with an expert.

Good luck and let us know what you find out.

do-over
Regular Member


Date Joined Oct 2003
Total Posts : 162
   Posted 2/2/2010 2:35 PM (GMT -7)   
It seems like something that I would have known about before now. I wonder how many people have it and don't realize it until they are adults?

weird .... I've been thinking about it all day. Tried to call my family Doc this afternoon .. but they closed early for SNOW.

do-over
Regular Member


Date Joined Oct 2003
Total Posts : 162
   Posted 2/4/2010 3:16 AM (GMT -7)   
my little brother's best friend is a dr. he forwarded a list of my symptoms to him. he said that it's really really rare, but that they did study it in med school. he suggested that i get a skin biopsy to investigate, but said it's not something he's ever seen in his practice. (of course, he's an ER dr and he's only been an MD for a few years) :)

will look into it ....

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 2/4/2010 5:17 PM (GMT -7)   
Just because it's rare, it doesn't mean you aren't the lucky one to have it.

The husband of the married couple knew he had it but his wife didn't know she had it. She was diagnosed when her husband had his doc check her out.

I hope you find your answer soon.

Unique1
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 2/16/2010 6:13 PM (GMT -7)   
I have heard of this syndrome and it is closely related to Marfan's Syndrome also. Check out www.marfan.org This is a connective tissue disorder. My family was always told we had Marfan's Syndrome but in 2006 we were tested for Loeys Dietz Sydrome (www.loeysdietz.org) and myself, my oldest son and daughter all have this. We have all 3 underwent open heart surgery to repair an aneurysm all within the last 4 years. I also have fibro, osteoarthritis.

I would start with your primary doctor. The Marfan foundation is wonderful along with the Loeys Dietz Foundation. I would email someone with the Marfan foundation and they should be able to get you on the right track in getting a clear diagnosis.

Best of luck and if you need any other information, please let me know and I will do what I can as I am part of the Loeys Dietz Foundation.

Take Care
Unique1

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 2/16/2010 6:48 PM (GMT -7)   
do-over, I am sorry to hear that you suffer from all these things and that it could be related to something new. Try not to stress too much as you investigate further....it will only frustrate you while you try to get answers. Just take care of yourself as best you can for now....that's important too.

hugs,
Pam
Conditions: Fibromyalgia, Chronic Pelvic Pain, FAI, Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines
(plus physically unable to vomit due to Nissen, and I have extremely tiny veins...a joy for blood work or IV's)
Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT
Medications: Oxycontin, Tramacet, Cymbalta, Nortriptyline
Other: Vitamin D, Multi-Vitamin

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